Sunday, May 4, 2014

Bittersweet Birthdays.

It's hard to believe I am now the mom of a 15 year old.  That certainly doesn't seem possible.  How on earth can my baby be 15 already?  How can I be old enough to have a 15 year old??

I swear, I haven't blinked - I've treasured every moment and have done all I could to make time stand still and keep him (and his sister) little... but it hasn't worked.  They are still growing up faster than I am prepared for, I still feel like I've blinked.

I love birthdays - everyone's.  I love taking a day (although I try to do this every day with my kids) and celebrate someone.  We all should be celebrated every day.  We all bring something special into this world, we all are important, we all deserve to be celebrated each day.  I, of course, think that is magnified times a million when it comes to my kids because they are my heart and soul and I love to celebrate them.

This year, though, Parker's birthday has been exceptionally difficult on both he and I.  While I can't put my finger exactly on why he is struggling yet, I do know why I am and it's made this 15th birthday of his very bitter sweet.

Parker was diagnosed with Fragile X Syndrome about 6 weeks before his 4th birthday.  Within a few months of that diagnosis, we were in California to see Dr. Randi Hagerman and her team at the MIND Institute. She was the first of many who told me that she was sure there would be an effective treatment before Parker hit puberty.  That would be a key time, puberty, but not to worry - we would have something by then.  She, and many others were absolutely sure of it.

Puberty came, hell - we might still be in it, I really don't know how exactly that works with boys since... well, I'm not one.  But we definitely aren't new to it. Parker stands towering at nearly 6 foot tall, he's not exactly my baby or my little boy anymore.  Yet, he is.  While biologically and physically Parker is now 15, academically he is no where near that age.  It's hard to say exactly where Parker is mentally. When it comes to many things - he's still very much a young boy who is happy to sit on my lap, blow farts on my face and still lights up every time he sees me.  When it comes to girls in bikinis - he's still very much a 15 year old guy.  It can make life confusing and perplexing for both of us but we manage to get by.

In the short year from Parker turning 14 to his 15th birthday today, a lot has happened that I didn't see coming and struggle with on a daily basis.  The drug trial he was on, STX209/Arbaclofen from Seaside Therapeutics was abruptly ended when the company ran out of money.  We didn't see it coming, tried - but couldn't stop it and eventually discovered what life was like without our miracle drug.  What we learned was after some trial and error, we found something that still worked.  Not the same, not helping with his anxiety (and therefore aggression) but definitely making a huge impact on his speech and cognition (which has helped with the aggression).  He is now in a place again where he is making great strides, we continued to move forward carefully watching the other drug trials.  Then, a couple of weeks ago, Novartis announced that it was no longer continuing development of mavoglurant in Fragile X and it was ending the long-term extension of AFQ056. While Parker wasn't on the trial, this was difficult news to swallow.

While there is still research going on and we all believe there will be an effective treatment, I also know that how this treatment will change Parker's life will be different than what I planned for him at age 4 and this is where his birthday has become a bittersweet struggle for me.

Everyone has hopes for their child when they are born, when your child is diagnosed with any type of special needs, those hopes change. When Parker was 4 and I believed there would be an effective treatment before he reached puberty, even with the passing days - I held onto that.  Last night, I knew that today a 15 year old would wake me up and I needed to face the reality of creating new hopes. Reality is sometimes a bit of a bitch.

I was determined to get through today making it a day filled with his favorite things, laughter and fun.  His mind and body had other plans today.  The day started out quiet enough, he watched TV for awhile while I slept and called for me when he was ready for breakfast.  Or at least I thought he was ready for breakfast.  When I came up the stairs, I hugged him, kissed his head and said, "Happy Birthday, Mommy loves you." His reply,was not at all what I was expecting.  Instead of the normal "You stink!" or something silly he said, "I'll kill you. Enough already. Stupid. I hit you."  and as I stood back wiping the sleep from my eyes I realized he meant it as a closed fist connected with my shoulder.  Parker has, honestly, no idea of his strength - and let me be clear there is nothing fragile or weak about him.  This was not the morning I had planned in my head.

We worked though it and I offered to fix him his favorite breakfast - Pancakes and sausage.  He refused.  I offered him cereal.  He refused.  The more choices I gave him, the more upset he was, the more I physically felt his frustration so we sat.  Quietly together on the couch, we just sat. While I wanted to reach out and hug him tightly, I knew I couldn't.  Touching him would only make it worse.  His body wasn't ready. As we sat my mind drifted to how I could alter our schedule for today to accommodate whatever this was I was up against. I wondered if he was getting sick, it's really not like him at all not to eat. Time will tell on this one.  Eventually we woke up Allison and set forth a plan for the day - we would go see Spider-Man 2 which Parker had been anxiously awaiting the release of.

He opened his presents bringing the first smile of the day to his face - a new Cubs outfits; shirt, shorts and shoes.  He was quick to get dressed and it became easier to make him laugh.  I told myself maybe it was the anxiety of the presents that started our morning off rocky but even with our plan his anxiety continued to sky rocket and his behavior would escalate then drop again.  We were on a roller coaster and getting off simply wasn't going to be an option - like everyone else who rides, you are on until the ride comes to a complete stop, like it or not. It's the rules.

We were able to have some nice laughs between anger bursts, he was proud to be wearing Cubbie blue from head to toe and I even managed to snap a few pictures. We made it to the movies and overall had a rather nice day.

It wasn't the day I had in mind and I'll physically be feeling the effects of it for the next few days but it did have laughter and smiles... and I do believe he enjoyed it which is the only thing that really matters to me.

I've often said to people that when Parker has a meltdown, he's no longer processing or able to make clear decisions.  I know this is true and getting him back to the level where he can is crucial.  Yet I can't help but wonder what does go through his mind.  I understand how the mind detaches itself and, although in a different way, mine does as well.  While I focus on Parker, part of my mind jumps ahead to wondering what his life will be like in the next 10 years and beyond.

My mind has been there a lot in these past 24 hours, I know my focus must shift.  I can no longer hold onto the feeling that a miracle drug will come and drastically change his life.  While I do believe it will happen, I don't believe it will happen in the time frame I need it to for Parker- because that time frame is right now (Dear Roche, please feel free to prove me wrong when you release your results of your current studies!) and I struggle with what this means and what that new plan will look like.

What I don't do is lose hope.  This weekend, my friend Jenniffer ran a half marathon, she did so wearing a Fragile X Shirt, as did my friend Gretchen.  My friend, Matt, is planning to run an upcoming marathon wearing a Fragile X shirt. People care.  People who's lives have been changed because of Parker and Allison do these things - that may seem little but actually are huge - because it makes a difference.  I believe.  They believe.  And we aren't alone.  Scientists, researchers, doctors - they believe too.  We've had a bumpy year and part of me really just wants to shut down but the other part of me knows, there are always bumps in the road, always.  No path is smooth.  You don't stop because you've hit a few bumps, you keep going and that's exactly what we'll do.

I really don't want to but I know I no longer have a choice.  I have to begin to focus on what life will look like for Parker in his future.  While my friends are looking at colleges for their children and talking about how soon their kids will be married and having children... I am bracing myself to Parker to live with the help of others and wrapping my brain around how that will look.  I am accepting that I will have to trust others to honestly care for him, not take advantage of him and to be sure his life is happy and complete.  I worry what that will look like if we can't get a hold on his anxiety and aggression.  I've spent his childhood learning to trust others to care for and love him - carrying that over into his adult life is equally as frightening and honestly even more so.

I won't always be here to fight for him.  I won't always be here 24/7 to pick up the pieces. I won't always be here... Over the next several years I have a lot of decisions to make, a lot of work to do and a lot of independence to teach... and a lot of trust in others to build.  I have programs I want to bring to our community, real choices for where he and his friends can live, and ways to be sure they are always embraced by the community ... and begin to take care of myself.

From before I heard his heartbeat for the first time,  he changed me. Parker completed me in a way that I can't explain. From in the womb and 7 months of morning sickness, he has challenged me, today was no exception. From the challenges, I grow.  I learn.  We grow.  We learn.

We make mistakes, we wish we had do-overs, we cry... but we also love.  More deeply than I could have ever imagined possible, we love.  We laugh.  We believe.  We step forward, together.

We learn who we are, we push to be better, we never give up... we always make it work.

On this bitter sweet birthday that didn't go as planned and my mind accepts what the reality of the future is, I continue to celebrate the amazing and incredible young man I gave birth to 15 years ago.  I continue to be thankful for every single day, every single word, every single laugh, ever single moment.

There is no time to "poor me/poor you/poor us" over the struggles we face, only time to love, to plan and most of all... to believe.

Happy Birthday, Parker.  I would not be me without you.  I love you more than I ever knew possible and am amazed at how it's possible for that love to continue to grow yet it does.  I am so proud of you.  I will continue to push you.  Most of all... I believe in you.  You are the most amazing guy I know.  I am the proudest mom ever. I know we are both worried but I promise... we'll figure it out.  I love you, Buddy.  Happy Birthday.


  1. So beautifully said!:) Happy Birthday Parker!:)����

    1. Thank you very much for your kind words and the birthday wishes for Parker!!

  2. This is beautiful.. My daughter was recently tested for Fragile X on her third birthday. Nothing about her birthday went like we wanted it to, but although it didn't live up to my expectations, it seemed to reach hers... Thank you for putting into words the feelings I haven't been able to articulate properly.

    1. Thank you, Lynn. Keep me posted on her test results! I'm happy to hear her birthday reached her expectations, those really are the most important!! Thinking of you!

  3. A beautiful tribute to Parker and to you.

  4. My son will soon turn 20. I haven't experienced any melt down and for that I am thankful. I never give up hope matter how much time passes and hope.and pray for the cure. I have never met you however through facebook I know you. I live this hopeful life but many times I sit and wonder the same. I thank you for all you support and defend our cause. I walk,.live, and breathe the Fragile X life. Someday someday I pray a miracle will surface for us all! Xoxoxo to you and your family!

    1. Thank you so much, Matoka! I'm praying for that miracle with you! My best to you and your family!